August 11
We had some very good news today. Steve is going to return to his doctors in St. Joe. Tomorrow will be the 3 month mark since transplant. He will see Dr. Brown once a month for 6 months then every 3 months and of course once ever year to the Doctors at KU. We say doctor Yarlagoda at KU today she was the doctor that was there the night he had the transplant. She is so very nice. She told us today that his creatinine was 1.97. Hard to believe. We didn't think it would go below 2.0. They said it could still improve months after a transplant.
He is on 2 immune suppressant meds, 2 blood pressure meds (very low dose) and he will finish his antibiotic tomorrow. He is really not on much compared to some patients. He will do blood work every 2 weeks which he does in Maryville and they send to KU and St. Joe.
When looking back from when this started to now the road was long and uphill and I have to admit there were times when we didn't think this would happen. It has been so good. I thank God every day for the person who's kidney Steve received. It is fricken amazing that an organ transplant is even possible. People should really consider being organ donors.
This whole situation has made us look and see things differently. I know now that if needed we could do it all over again especially when the out come has been this good. You know when they say things always change never stay the same. That is true, even when times seem so bad they can change for the better. A lot of praying helps! There have been so many changes since December 2008 for our family. When I look back even though the times were tough we had some wonderful times also.
Christy
Thursday, August 11, 2011
Wednesday, June 29, 2011
June 29th
I know it has been a while since I have put anything on here. I had a good amount typed one morning this week and lost it all before I could post it. I think it had something to do with the storm we had.
Steve went to KU today for another appointment. They are happy with his blood work, it is staying stable. He has a heart test coming up. After transplant once a year a heart test needs to be done. Shortly he will be on 2 week appointments and they even talked today about when they would turn him back over to his doctors in St. Joe. They didn't give a date but a least they are talking about it. It will be nice before the weather gets cold and snowy just to go to St. Joe.
We seem to get over one hurdle and another comes up. We are working on anit-rejection meds cost and the insurance company. Holy cow how can something so wonderful such as getting a kidney be such a miracle and the meds cost so much money. Insurance and drug companies have all the power.
Christy
I know it has been a while since I have put anything on here. I had a good amount typed one morning this week and lost it all before I could post it. I think it had something to do with the storm we had.
Steve went to KU today for another appointment. They are happy with his blood work, it is staying stable. He has a heart test coming up. After transplant once a year a heart test needs to be done. Shortly he will be on 2 week appointments and they even talked today about when they would turn him back over to his doctors in St. Joe. They didn't give a date but a least they are talking about it. It will be nice before the weather gets cold and snowy just to go to St. Joe.
We seem to get over one hurdle and another comes up. We are working on anit-rejection meds cost and the insurance company. Holy cow how can something so wonderful such as getting a kidney be such a miracle and the meds cost so much money. Insurance and drug companies have all the power.
Christy
Wednesday, June 8, 2011
Wednesday June 8
Steve's appointment at KU went well this week. He was able to get rid of one more of the medications. His blood pressure is doing good and will be cutting back or stopping the blood pressure meds soon. His creatinine is 2.4 and they are hoping it will get below 2.0. He is feeling pretty well, still gets worn out easy. He has driven a few times but doesn't like the gravel roads too bumpy.
His day consist of walking out to the shed tinkering around and walking back to the house. He has driven the ranger around the farm some and seems to get a long with that ok. At least he has his driving privileges.
Will let you know how next week appointment goes. He will be getting the steins out this month, will see how that goes. They say he won't feel bad at all after doing this.
Christy
Steve's appointment at KU went well this week. He was able to get rid of one more of the medications. His blood pressure is doing good and will be cutting back or stopping the blood pressure meds soon. His creatinine is 2.4 and they are hoping it will get below 2.0. He is feeling pretty well, still gets worn out easy. He has driven a few times but doesn't like the gravel roads too bumpy.
His day consist of walking out to the shed tinkering around and walking back to the house. He has driven the ranger around the farm some and seems to get a long with that ok. At least he has his driving privileges.
Will let you know how next week appointment goes. He will be getting the steins out this month, will see how that goes. They say he won't feel bad at all after doing this.
Christy
Wednesday, June 1, 2011
June 1st 9:30pm
Steve had his first follow up appointment at KU yesterday. It went pretty good. He was able to cut down one of the anti-rejection meds and stop one of the other medications all together. He still has some fluid on and he is still taking lasix to get rid of it. They told him to take his pill then make sure his feet are proped up high. I think this is helping.
He didn't feel as good today as he has but I think he is going to have these days. He is still having trouble sleeping. Goes to bed and sleeps a couple hours then is up and down the rest of the night then is ready to sleep about 6:00am kinda of like a baby with colic. His diet has changed some. The opposite of what it use to be. They are wanting him to increase dairy with every meal. So bring on the ice cream.
His next appointment is next week. We will see how his numbers look then.
Christy
Steve had his first follow up appointment at KU yesterday. It went pretty good. He was able to cut down one of the anti-rejection meds and stop one of the other medications all together. He still has some fluid on and he is still taking lasix to get rid of it. They told him to take his pill then make sure his feet are proped up high. I think this is helping.
He didn't feel as good today as he has but I think he is going to have these days. He is still having trouble sleeping. Goes to bed and sleeps a couple hours then is up and down the rest of the night then is ready to sleep about 6:00am kinda of like a baby with colic. His diet has changed some. The opposite of what it use to be. They are wanting him to increase dairy with every meal. So bring on the ice cream.
His next appointment is next week. We will see how his numbers look then.
Christy
Sunday, May 29, 2011
Sunday 8:30pm
You may have heard by now Steve got out of the hospital yesterday. We had Blair's graduation party and Steve's bringing a new kidney home party. Thanks to all who help get ready for the party we couldn't have had it without all of you. All went well. Our bed felt so good. After 16 days uncomfortable sleeping, being woke up in the night to have vitals taken and noise it is so good to be home.
We will be going back on Tuesday for lab work to see where his levels are. This is going to be a weekly thing for a while. He has to be very careful for the first 3 months, using germ x and staying away from anyone who is sick.
It is so good to be home. Thank you everyone for all the work, cookies, cards, gifts, support and prayers and help with dialysis while going through all of this. We couldn't ask for better family and friends.
Love Steve, Christy and girls.
You may have heard by now Steve got out of the hospital yesterday. We had Blair's graduation party and Steve's bringing a new kidney home party. Thanks to all who help get ready for the party we couldn't have had it without all of you. All went well. Our bed felt so good. After 16 days uncomfortable sleeping, being woke up in the night to have vitals taken and noise it is so good to be home.
We will be going back on Tuesday for lab work to see where his levels are. This is going to be a weekly thing for a while. He has to be very careful for the first 3 months, using germ x and staying away from anyone who is sick.
It is so good to be home. Thank you everyone for all the work, cookies, cards, gifts, support and prayers and help with dialysis while going through all of this. We couldn't ask for better family and friends.
Love Steve, Christy and girls.
Friday, May 27, 2011
Friday 2:30pm
Not going home today. His prograft level in the blood today went from 2 to 6 which is good it is coming up. They want it up to 9 before they let him leave so they are adding another pill. She promised she will have him out to be home in time for the party at 5:00pm. Since the holiday on Monday she needs to have him stay and have labs done in the morning and then we will need to be back down Tuesday morning.
He can argue all he wants but he seems to be ok with that. Hey, they got him a kidney. He will be home to party but here are the rules. Doctors says everyone use germ X if anyone is not feeling well runny nose, cough, etc... stay on the other side of the room. Be very careful shaking hands and hugging. I am scared to take him anywhere, need to put him in a bubble for about 3 months. Party on!!!!!!!!!!!!!!!!!!!!!!!
Christy
Not going home today. His prograft level in the blood today went from 2 to 6 which is good it is coming up. They want it up to 9 before they let him leave so they are adding another pill. She promised she will have him out to be home in time for the party at 5:00pm. Since the holiday on Monday she needs to have him stay and have labs done in the morning and then we will need to be back down Tuesday morning.
He can argue all he wants but he seems to be ok with that. Hey, they got him a kidney. He will be home to party but here are the rules. Doctors says everyone use germ X if anyone is not feeling well runny nose, cough, etc... stay on the other side of the room. Be very careful shaking hands and hugging. I am scared to take him anywhere, need to put him in a bubble for about 3 months. Party on!!!!!!!!!!!!!!!!!!!!!!!
Christy
Thursday, May 26, 2011
May 26 4:00pm
I am back in KC today with Steve. Now he is playing the numbers game. His CB3 which is how stirred up the immune system is was at 8 today. It has to be below 10 and yesterday it was at 6. When you put a foreign organ in the body your immune system gets all crazy because it knows it is not yours and tries to reject it. This is why he has been receiving pretty much everyday a bag of Thymo goblin through his IV anti-rejection medicine. Yesterday they started him on the pill form of prograft anti-rejection meds. He has to have this in his blood and the level on this has to be between 10 and 12. Today it was only at 2 so they increased the morning dose to 3 pills verses 1. The CB3 needs to be below 10 and the level of anti-rejection needs to be between 10-12.
We went over the meds he will be coming home on and it is not 20 like we were first told. Looks like 12. 3 anti-rejection meds, 1 antibiotic, 1 medicine to kill fungus, 1 steroid, 1 to prevent infections, 2 blood pressure meds, 1 to make your tummy feel better because of all the above that you are taking etc... I knew a pharmacy degree would come in handy.
They started giving him lasisks again today he has had it twice and it works immediately. His ankles are still pretty fat. I am wondering if they will make him stay to get more fluid off before he goes home? He has to pee about every 15 minutes. He has lost approximately 9 lbs of fluid this process is pretty slow. His kidney is working at about 18% and I know that doesn't seem like much but eventually they say it will get about 60%. You and I don't even have a 100% of our kidneys working, this is what the docs say. They want what they want, first it was urine they wanted and that is what they got now it is quality urine they want which means the clearance or the creatinine level which today was 3.5. The nurse said she thinks it will get to 1.0 again.
He seems to be in pretty good humor. We will see what happens tomorrow when he gets the work go or stay. The nurse told him today he has not been here the longest. Your still in the same month. Other patients have been here 1 month or longer. One person had a transplant after 17 years of dialysis and was her for several weeks, 5 I think.
We have written our letter to the donors family thanking them for the gift of life. We have decide to keep this private but will let you know if they respond. So bittersweet! Please pray for the donors family.
I am back in KC today with Steve. Now he is playing the numbers game. His CB3 which is how stirred up the immune system is was at 8 today. It has to be below 10 and yesterday it was at 6. When you put a foreign organ in the body your immune system gets all crazy because it knows it is not yours and tries to reject it. This is why he has been receiving pretty much everyday a bag of Thymo goblin through his IV anti-rejection medicine. Yesterday they started him on the pill form of prograft anti-rejection meds. He has to have this in his blood and the level on this has to be between 10 and 12. Today it was only at 2 so they increased the morning dose to 3 pills verses 1. The CB3 needs to be below 10 and the level of anti-rejection needs to be between 10-12.
We went over the meds he will be coming home on and it is not 20 like we were first told. Looks like 12. 3 anti-rejection meds, 1 antibiotic, 1 medicine to kill fungus, 1 steroid, 1 to prevent infections, 2 blood pressure meds, 1 to make your tummy feel better because of all the above that you are taking etc... I knew a pharmacy degree would come in handy.
They started giving him lasisks again today he has had it twice and it works immediately. His ankles are still pretty fat. I am wondering if they will make him stay to get more fluid off before he goes home? He has to pee about every 15 minutes. He has lost approximately 9 lbs of fluid this process is pretty slow. His kidney is working at about 18% and I know that doesn't seem like much but eventually they say it will get about 60%. You and I don't even have a 100% of our kidneys working, this is what the docs say. They want what they want, first it was urine they wanted and that is what they got now it is quality urine they want which means the clearance or the creatinine level which today was 3.5. The nurse said she thinks it will get to 1.0 again.
He seems to be in pretty good humor. We will see what happens tomorrow when he gets the work go or stay. The nurse told him today he has not been here the longest. Your still in the same month. Other patients have been here 1 month or longer. One person had a transplant after 17 years of dialysis and was her for several weeks, 5 I think.
We have written our letter to the donors family thanking them for the gift of life. We have decide to keep this private but will let you know if they respond. So bittersweet! Please pray for the donors family.
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